Sunday, April 17, 2011

Bits and Pieces: CCSVI, MS Meds, The Scum of the Earth, and More…

I'll start out with some shameless self-promotion, because it's my blog and I can do anything I want with it. So there.

On Wednesday, April 20, from 8 PM-10 PM, I'll be a guest on the Internet radio show "MSLOL-Radio: "It's All about the Blog" (click here). Hosted by the ever affable Amy Gurowitz (click here), I'll be joined on the show by Lisa Emrich, MS blogger extraordinaire (click here). Listeners will be able to ask questions via phone or instant message, so you'll be able to join in on the fun. Please tune in, if only to hear how many times I can say "um" in a single sentence…

The MS universe was dominated this past week by news coming out of the annual meeting of the American Association of Neurology, this year held in Honolulu, Hawaii. Yes, those neurologists have it rough. There were lots of presentations given on a slew of drugs currently making their way through the research trial pipeline (no shock there), and some controversial reports on CCSVI (no shock there, either). I'll also throw in a few other items of interest (at least my interest), so hopefully you'll find this edition of Bits and Pieces worthy of your time and attention…

First, The CCSVI Department: the big CCSVI buzz out of Honolulu was the publication of a paper detailing the results of the Buffalo Neuroimaging Analysis Center's Doppler ultrasound study of MS patients and healthy controls. The initial results from the study were first released over a year ago, but this is the first time they were published in a medical journal (click here).

The Buffalo researchers found that about 55% of MS patients tested positive for CCSVI, as did about 22% of healthy control subjects. Additionally, about 45% of patients with other neurologic diseases also tested positive for CCSVI. While there is some dispute over the accuracy of the numbers, especially those of the healthy control subjects, some of whom were family members of the MS patients tested (though not all blood relatives), the real ruckus was started by the conclusions of the lead researcher, Dr. Robert Zivadinov, who stated that CCSVI was likely not a cause of MS, but rather appeared to be caused by the disease. This conclusion set off a frenzy of news reports screaming that the entire CCSVI hypothesis had been thrown into doubt (click here and here), and the usual shit storm of debate on Internet MS forums and Facebook pages.

To my mind, at least, the question of cause and effect is secondary to inquiries as to whether or not treating the venous abnormalities now known as CCSVI actually help the symptoms of MS patients. This can only be ascertained by doing robust treatment trials of CCSVI venoplasty, some of which are already underway, with more coming (click here). The study does show that there is a high correlation between venous blockages and MS, a finding that alone warrants much more study. For some very good reporting on the Buffalo study, please watch the two videos at the top of this article (click here), produced by CTV of Canada. The second contains a substantive interview with Dr. Zivadinov himself, who clearly thinks that his findings do not invalidate the CCSVI hypothesis, but instead beg for robust follow-up studies.

The MS Meds Department: predictably, since almost all MS research is funded by big pharmaceutical companies, the MS portion of the AAN meetings was dominated by progress reports on new MS drugs working their way to the market. Two new oral drugs, Biogen's BG-12 (click here) and Teva's Laquinimod (click here) both showed positive results, although the Laquinimod results were found by some (investors) to be disappointing (click here). Interestingly, BG-12 appears to work, at least in part, by being a neuroprotective agent (click here), unlike most other MS drugs, which are designed to primarily suppress or modulate the immune system.

The MS vaccine Tovaxin, once given up for dead (click here), has apparently risen from the grave, as its manufacturer, Opexa, released positive test result data (click here). According to the research, Tovaxin works best on patients who have had no previous exposure to any other MS disease modifying drugs. Not surprisingly, the price of Opexa stock went through the roof on the news (click here). I'll refrain from making my usual snarky comment about the crass commercialization of disease, and how much it makes me want to vomit. Whoops, looks like I didn't do such a good job at refraining…

The most dramatic pharmaceutical findings involve a drug known as Campath, produced by Genzyme, which appears to be startlingly effective in eliminating MS symptoms in patients, even for years after they've stopped taking the drug (click here). Campath is a drug given by infusion two or three times a year, and the recently released findings, which involved patients who had taken the drug for three years, showed that after five years 65% of treated patients were free of clinically active disease, and 87% were free of accumulated disability. The drug is not without its downside, though, as 30% of treated patients developed autoimmune thyroid disease. Campath is also associated with a potentially serious blood clotting disorder, and an increased incidence of respiratory and other infections.

The problem, of course, is that none of these drugs address the underlying cause of MS, which remains unknown. Drug companies are making so much money by finagling with patients' immune systems, and turning those patients into customers for life, that very little research into the mysterious disease trigger, or, more likely, triggers, has been funded and undertaken in the 20 or so years that the autoimmune theory has reigned supreme. This should have every MS patient outraged. Unlike some other MS activist, I can't condemn the current MS drugs en masse, since they do increase the quality of life of a proportion of patients taking them, but the lack of research into the roots of the disease does make my head explode.

This brings us to The Root Cause Department: a recent look at disease clusters in the US found an MS cluster in the small town of Wellington, Ohio, in which 25 cases of MS were reported within the six block radius (click here). This would seem to point to some kind of environmental factor (something infectious or toxic) being involved in triggering MS, at least in some patients. There have been quite a few MS clusters identified through the years, but none has ever yielded answers as to what created it (click here). Though these clusters don't prove anything, they do provide plenty of food for thought.

In my opinion, what we call multiple sclerosis could very likely be a collection of similar diseases, with a wide variety of causes and triggers. Certainly, a genetic predisposition appears necessary, and from patient to patient the trigger that sets off that predisposition very likely varies. Possible triggers could include vascular problems, infectious agents, toxins, dietary and vitamin deficiencies, or a combination of factors. I think it very likely that future MS therapies will need to be tailored to each individual's particular disease characteristics. Of course, the problem lies in sorting all of this out, a process to which tragically few resources are currently being devoted. Too much money to be made figuring out new and better ways of stomping on the human immune system…

The What the Fuck Is Wrong with the World Department: I have recently been coming across way too many accounts of crimes being committed against MS patients. From scooters and wheelchairs being stolen (click here and here and here), to MS patients being robbed and assaulted (click here and here) to people masquerading as MS patients in order to make off with donations to MS nonprofits (click here), it's enough to shake my already fragile faith in humanity. I suppose we live in desperate times, but preying on the infirm should warrant some kind of extraordinary punishment. I know that we have supposedly evolved past a simple "eye for an eye" system of justice, but it would be extremely satisfying if the scumbags perpetrating these acts could somehow be given an extremely aggressive form of Multiple Sclerosis. It kills me to watch the nightly news and see a literal parade of the deranged and demented marching past the cameras, walking with ease despite having their hands cuffed behind their backs and hoodies pulled over their heads. I've learned not to expect a whole lot of justice out of the universe, and the notion that life is fair was long ago rendered laughable (even before my diagnosis), but the sight of rapists, murderers, and child molesters sauntering off to jail without so much as a limp calls into question a wide variety of belief systems…

The Do You Really Want to Know Department: the Mayo Clinic has developed a test which could indicate how fast a patient who has progressed from RRMS to SPMS will accumulate disability (click here). I certainly understand the practicality of possessing this knowledge, as it would allow for planning and preparation, but I'm really not sure I'd want to know. In some cases, ignorance is still bliss. How about you? Would you want to know?

The Eye Candy Department: one of the unexpected pleasures I've had in writing this blog is getting to meet (even if only through e-mail) interesting people from all over the world. WK reader Paulien Bats, from Groningen, the Netherlands, is an illustrator with MS who recently created the image below. I really like it, and not only because Albert Einstein is one of my main men. It's copyrighted and all that stuff, so please don't steal it. Thanks, Paulien…

19 comments:

Thanks for sharing Marc! I am glad the CTV News stories had some truth to them but yet again the negative rings so true.I'm right with you in the department of there being more than on disease at work in MS and that we are not all suffering the same. It goes to explain a lot of the differences between people I know grouped together under the MS umbrella.Who will step up and look for the cause? Another great insight. Too bad the money is coming from the drug companies for research.I'm thinking clearer these days and looking to use the outrage I feel in a more positive way. Thanks for helping me educate myself for the fight ahead.Take Care Marc,Joanne

I hope that the auto-immune theory gets its share of scrutiny like the CCSVI theory has received. I would love to see this. I guess we can be happy this disease is being looked at seriously after 20 or more years. Thanks Dr. Zamboni and thanks Marc for a well written rant.

Marc, i appreciate your posts and have for a while now. You manage to pull strands of news and research into an understandable, insightful, humourous and humane digest but, the thing i am most grateful to you for is introducing me to the word 'fucktard'.it's given me so much pleasure, thank you.keep well

The Buffalo reserachers did not test with venogram? Is that correct? If they did not, then the findings would not be accurate. I've read many times that even though patients have had the ultrasound/doppler, findings changed once a venogram was performed (which is said to be much more accurate).

Marc, As always look forward to read your blog. I wonder who will research the cause of MS...we have big pharma researching how to contend with symptoms.I have read that the NMSS has helped some but I think they have really lost sight of Sylvia Lowry's mission when one really analyses where they put their money/our money. When a child is diagnosed at the age of 4 with no MS in her family- was she born too far away from the equator? did she not get enough vit d? did she experience too much stress? Why?

Considering self-fulfilling prophecies..."In some cases, ignorance is still bliss. How about you? Would you want to know?"No way. My mind is too strong and since stress seems to play a factor in every disease, including MS...I'd rather not know. Ignorance and bliss and all that.

re : preying on the infirm, I think that bullies and predators should have their naughty bits chopped off and fed to them ...then be bound and tossed from an airplane into the sea...but that's just me..

Joanne-what's really unfortunate is that there has to be a fight at all. The corrosive effects of big-money have changed the way medicine and medical research are practiced, particularly over the last 20 years. As long as there are billions of dollars a year to be made treating patients without curing them, where's the motivation to cure? The problem is systemic, driven by the fact that over 70% of medical research in the US is funded by pharmaceutical companies, whose mandate is to increase their stock price, not produce cures…

Quilter-hope is a good thing. I'm not sure I'd want to know, either.

Pasopati-I fixed the date of the show, thanks for the heads up. It's Wednesday, April 20, at 8 PM Eastern Time.

Dagmar-it's certainly time for the autoimmune theory to start to go bye-bye. It's clear that the immune system problems are a symptom of some underlying cause. Let's start looking for the cause…

Webster-thanks for your kind words, but as ranting goes, this one was mild. One of these days I'm really going to let loose…

deezll-fucktard is a fantastic word, but I can't take credit for it. It was first "spoken" by an Internet friend of mine…

Anonymous-it would be terrific if large numbers of patients could be tested via catheter venogram, but the cost is prohibitive, and the funding just isn't there. There also ethical issues involved with putting healthy patients through an invasive procedure. Of course, this doesn't hold true for the MS patients in the study.

Karen-I think the causes of MS vary, and differ from patient to patient. Who will research the cause? For now, we have to rely on academic and government research labs, but quite often these facilities are underfunded. Much promising research is left to wither on the vine in research labs, when money to pursue it runs out. Very sad…

Sue-seems that "ignorance is bliss" is the consensus. It will be interesting to see how widespread such testing becomes…

Right on with what you said in the Root Cause section! I've been saying this since I was diagnosed. Multiple Sclerosis just means, literally, 'many scars'. WTH, yes, the Dr.s can see we have scars on or brain - lesions - anyone want to find out WHY rather than finding ways to make symptom appearance slow down?!

And no, I would not like to know what a test and Dr. think my disease progression will be. I'd like to live with the belief that I can still do something about it.

I have been a "progressive" person my whole life so classification means shit to me. Testing to predict disability? Is that like one of those palm readers with a crystal ball is now working out of the Mayo clinic? WTFSomething in this toxic world of ours is making this disease grow like a fungus from amongus. Forget about the millions spent on new meds discussed in exotic places, figure this bastard out. I heard next years neuoro convention is going to be in Detroit for asthetic purposes.Aurelio lopez

I was diagnosed with RRMS this month. I just wanted to say thanks for maintaining your blog - I have already learned so much. I am really interested in the MS clusters found in Ohio, as I found out from my nurse that there are at least five other people with MS who live in my building. These clusters are such a valuable source of information for learning about environmental vs. internal factors with regards to MS.

Your blog has also been an inspiration to me and I decided to create my very first blog as well. I hope it also will be a useful source of information for people.

Marc, thanks for the info and for always being a pleasure to read. I appreciate how you zero in on the deficiencies in MS research and regularly bemoan the money related reasons for this - you remind us all to get more vocal and active.

good post Marc!! i want to know more about Campath now. but i dont like those odds on side effects....

and as for wanting to know about progression and whatnot? part of me would want to know, as i feel myself declining quicker than i would like and knowing would help me to plan and prepare. and i HATE surprises too. if i KNEW how long, i wouldnt have to wonder "is this the day it "gets" me? is this the day i wont be able to get out of bed?"

BUT knowing would certainly stress me out even more than i already am, and would only serve to speed things up...

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...